It’s taken me much longer than usual to write this post because I got the idea of transcribing the recording we made of the appointment as a way to help me write. We’ve made a recording every year, but this was the first time I’ve listened back to one of them and tried to type it all out. I felt like I should, because every year there’s been something Dr. Cheney has said that I’ve eventually wanted to go back to, but I haven’t ever had the energy to listen through the whole appointment to find it. Furthermore, I felt like I pretty much had to write it all out in order to write this entry, because this was the first year that I felt unsure of my ability to summarize from memory the general gist of what I’d been told. It’s not that my memory is so much dramatically worse, but that Dr. Cheney was throwing a lot of new information at us.
My memory on these trips is always poor, as is my memory of them afterward. Because the amount of energy required for the trip is so much greater than my usual expenditure, and so much greater than my capacity, really, the stress of it causes my system to borrow from anywhere it can to get me through, and one major place that it borrows from is what would usually go to my brain. So it short-circuits my short- and medium-term memory. We’re talking completely forgetting and having to be reminded of events that have happened within, say, the last two hours. This has benefits in that I don’t remember much about the trip afterward, which makes it easier to go through with when it comes around each year, but as a result it’s also difficult to write a blog entry about it.
My short-term memory being totally shot at the time makes it very difficult to follow Dr. Cheney, who is as verbose as he is intelligent. Making the transcript showed me that part of the reason I leave his office confused is that he will frequently argue both sides of an issue, or even four or five sides of an issue, in a Well, it may be this caused by this and if it was we could do this for it; but on the other hand, it could be that this is happening, and if that were the case, you might see this or that, and given that, it might seem obvious that this would be the solution, but you don’t want to do that, because we’ve found that if you do, it hurts instead of helps, but if the first part doesn’t hold, we would have to go in this direction, as long as these conditions are met, which we don’t know if they are yet. It is wonderful that he has so many ideas, such thorough experience of the illness, and an encyclopedic understanding of the human body, but when my brain is functioning on the level of pocket lint, the bulk of it flies right over my head, smacks against the wall, and all I can remember are a few keywords. Thus, the transcription.
This is the fifth time we’ve taken this trip. Last year, I noticed along the way that there were a substantial number of hotels in Beckley, West Virginia, which is just about exactly halfway between home and Asheville. Every year that we’ve stopped halfway (the third year I decided we’d drive straight through on the way down, which was a mistake with a capital M), we’ve stopped in Charleston, which adds about a half-hour that we then have to backtrack in the morning. This year I proposed we do Beckley instead – anything to shorten the trip and save a little bit of energy. We made a reservation at the Courtyard Marriott – I always liked Courtyard when I used to travel on business. And here is where I didn’t realize, couldn’t have realized, I was making a substantial error.
We were checked into the hotel, and my mom and Chimp brought me upstairs, parked me on the suite’s sofa, and went back down to get our substantial supply of paraphernalia. Within a minute or two, I realized I was feeling very strange. And then I began to feel sleepy. Sleepy. Those of you who know my history with this illness will realize that “sleepy” is not really in my body’s current set of options. Exhausted, yes, constantly. In need of sleep, yes. Actually sleepy? No. I haven’t felt sleepy for one single minute since my major insomnia problems began in 2007. But here I was, feeling sleepy and strange, in a bad way. Could it be I was just really tired from the trip and my body was doing something it doesn’t usually do? I entertained the idea, but I recognized that there was a substantial sensation of this is a bad thing going on and that the sleepiness had come on quite suddenly when I’d been parked on the couch. And then, looking around at the room, I came to the conclusion that the decor was very up-to-date. Uh oh.
My mom arrived back in the suite. I don’t remember our conversation in detail, but I conveyed that I really needed to get off that new couch and away from whatever it was made of and whatever it was outgassing, right that minute. She wheeled me into the bedroom side of the suite, which, thankfully, had a sliding door to a balcony that could be flung open and additionally, thankfully, it was in the mid-60s outside. The sleepiness dissipated immediately, evidence that the couch was Bad News for Jocelyn. Or at least that if it was to help me with sleep (possibly permanently), that I should have been swallowing whatever-it-was and not breathing it.
One thing that made a substantial difference in the ease of the trip this year was the Cortef prescription that Dr. Cheney wrote me last year, after he’d observed me breaking down in tears at least once every time I showed up in his office. I have only taken minuscule doses – I think the most I’ve taken is a quarter of a five-milligram tablet at a time – but it’s been enough to give me margin when I need it that my body can’t supply me with. I made it through the appointment without crying once this year, but where it really helped was on the way home. Because of a massive rock slide on I-77, just over the West Virginia line, our usual seven-hour trip home took an extra three hours. I hate to even consider how much more fried I would have been without the Cortef.
Dr. Cheney moved to a new building this year. Last year, I had to be moved from his office out into the hallway of his suite halfway through my appointment. The day was unusually warm and the air conditioning was not keeping up enough to keep things below my hard limit of 72 degrees. His new office is a bit smaller – it doesn’t have a couch in the waiting room, so we only brought me over from the hotel when he was ready for us. His new office has some windows that don’t have blinds on them, so next year we’ll bring more supplies to provide darkening, because my light sensitivity is my one major symptom that has worsened. Additionally, the echocardiograph is in his office instead of in a separate room in the suite, so I didn’t have to be shifted from room to room and back – and as above, every little bit of energy saved helps.
Dr. Cheney told us that the new office was saving him a substantial amount each month in practice costs. “Medicine,” he said, deadpan, “is a very expensive hobby.”
One of the main things that being a Cheney patient gets you is a regular supply of New Things to Try. There is, of course, a core set of therapies, but he’s always sniffing out new ones. Many of them fall by the wayside (a currently ten-year-old article about Dr. Cheney will be littered with abandoned modalities), and only the truly solid ones seem to stay in the regimen over time. This year, the new thing is nasal vasoactive intestinal peptide, or nasal VIP.
Nasal VIP is something that Ritchie Shoemaker, who is known for treating mold-related illness, did an 18-month study of in 20 patients [PDF]. Dr. Cheney said that he and Dr. Shoemaker have traded patients that one or the other of them haven’t been able to help for some reason, and it was one of those patients who brought it to his attention. (“Now about a year ago, I had a patient come in here who was seeing Dr. Shoemaker for mold illness. She didn’t think he helped very much, but she said, ‘The one thing he gave me that helped was this nasal spray. It’s the one thing I like.’ And I said, ‘What does it do?’ And she said, ‘It helps me think.’ So she’d take a squirt, and she’d have six hours of better brain function.”)
Dr. Cheney’s main method of measuring the potential effectiveness of treatments is having patients take them while they’re undergoing echocardiography, thus he has an echocardiograph just lying around the office. So, in the way that you might photocopy your bum at a raucous holiday office party (well, not you, someone much less classy than you), as long as you have the echo around, you might as well test everything on it, right? And it happened that the day before my appointment, Dr. Cheney had tested VIP on a patient for the first time.
At this point I should back up a little bit. It was not just Ritchie Shoemaker’s patient that caused the arrival at this point. Within the last year, Dr. Cheney got interested in Chronic Cerebral Spinal Venous Insufficiency, a circumstance of poor bloodflow in the brain and spinal cord, with blood flowing in the wrong direction, previously primarily found in patients who have MS. He sent a small number of patients to be evaluated, and found that those patients universally had it.
At my appointment, he showed us video from an echocardiogram and, knowing that in previous years he’d shown me the diastolic dysfunction of my left ventricle, explained CCSVI this way: “Because the [left ventricle] isn’t filling very well, the [right ventricle] works harder to fill up the right side. Unfortunately, it squeezes hard, and reverses the flow of blood through the tricuspid valve, and up in the opposite direction.”
“What this is that you’re seeing is the pressure gradient of blood across the tricuspid valve moving blood in the opposite direction from the normal flow. It’s going back up into the right atrium, back up into the superior vena cava, back up into the internal jugular veins, and back up into the deep cerebral veins. It also reverses flow in the [inferior vena cava] and in the hepatic veins.”
“That’s the right ventricular power, that it reverses the flow. The only other thing you need [to allow blood to flow in the wrong direction] is a low-flow state. The point being, that it’s harder to reverse the Mississippi than the Swannanoa. Because the Mississippi has way too big a flow to reverse it – it would take too much power. Whereas the Swannanoa Creek would be easy to reverse, because there isn’t a lot of water. So if you have low flow rates, low venous outflow in the brain and in the liver, then this [the hard right ventricular squeeze] is all you need to reverse the flow.”
Now, I don’t know precisely why the aha! moment happened – my guess is a simple combination of a thorough understanding of the human body and having an available, applicable piece of equipment – but as he couldn’t visualize CCSVI using his echocardiograph, Dr. Cheney thought to look at the liver to see if there was a similar flow reversal there – and there was. He calls this chronic hepatic venous insufficiency, or CHVI. He had visualized it in a dozen or so patients by the time I had my appointment, but it wasn’t until the day before I arrived that he combined looking for flow reversal in the liver and administering nasal VIP, knowing it should improve cardiac output, to see if it would fix the flow reversal, and it did: “Yesterday we proved it. It was unbelievable. And the first thing we did is we looked at the TR Max PG – which looks like this, kind of. This was pre-VIP, this was post-VIP. And this distance is called the TR Max PG. And you’ll notice that this one’s steeper, and this one’s shallower.”
“This pressure here varies in chronic fatigue syndrome, but it tends to fluctuate around 15 mm of mercury, and this dropped to 13 mm of mercury. Roughly a 15% drop in five minutes. And it took five minutes. We took measurements each minute. And at one minute, there was no change, two minutes, no change, three minutes, no change. At four minutes out, no change. And at five minutes, it changed. Now if we’d watched it for longer, it could have continued to get better; we didn’t look beyond five minutes. But once I saw this, we’d changed the physiology that causes reversals. I then rolled her over and looked at her liver, and sure enough, the red flashing reversal had disappeared. That is a very big deal. In fact, it may be the biggest therapeutic breakthrough we’ve ever had, therapeutically, for this disease. Because this also drives reversal in the the brain.”
“It took five minutes to see that. No one’s ever shown that before. In fact, no one has ever looked to see if people have reversal of flow in the liver. Now we have looked for reversal of flow in the brain, using CCSVI technology, which is not available here, but everyone I’ve tested has it, without exception. And so far, everyone I’ve been able to visualize the liver on has this. And so it looks like a universal problem [in CFS] and what that will do is will devastate you. Because if you reverse capillary bloodflow, then the brain doesn’t have proper removal of toxins, and of metabolic waste products, and there will be a buildup of acids. Acid development within the cell will destroy enzyme functions, so it’s like your entire brain doesn’t work anymore. And of course, particularly in respect to bloodflow, there’s a lack of bloodflow, of proper bloodflow in the central nervous system. And then the body tends to live in a hyperadrenergic state, like fight or flight. It’s impossible to sleep.”
So if you have CCSVI/CHVI, it’s particularly difficult to understand and write a blog entry on CCSVI/CHVI. Which I can attest to. Furthermore…
“Therefore, flow reversal in the liver will destroy liver function. Because what does the liver do? It does three major things. It detoxifies the body from food, detoxifies the body from metabolic waste products and bacteria, detoxifies drugs, detoxifies environmental toxins. So you don’t do that very well. So you become an environmental invalid. And you’re a slave to a certain diet. It’s also important for intermediate metabolism. So it’s important to convert fats to glucose, glucose to fats, and protein to glucose. All the intermediate metabolites are important to stabilize you, metabolically speaking. So you don’t do that anymore. And [thirdly] [t]he liver is a big-time immune modulator. And the reason it’s such a big modulator, particularly in the down direction, is that the stimulation of the immune system potentially is mammoth in the GI tract, with all the food proteins in there, with all the metabolic waste products and bacterial debris. So you have to have a way to sort of shut off this stuff, otherwise you’ll react, overreact. Well, guess what? You can’t shut this stuff off, so you’re in a constant state of immune activation. “
Anybody recognizing themselves yet?
Eventually I was rolled over and the echocardiograph fired up to do the usual measurements and then look for evidence of CHVI. I got some good news, in that my stroke volume is now 55, which is still below normal, which would be 80, but in 2009, the first year I saw Dr. Cheney, it was a truly pathetic 29. It wasn’t hard to find tricuspid regurgitation on me (“See the leak? See the white flash there going white blue, white blue? This is tricuspid regurgitation. That is what reverses flow in the brain.”), but it was a bit of a struggle to find evidence of CHVI on me. Michael, the tech, had had a dickens of a time, because the flow reversal in the liver is visible on exhale at the same moment as a heartbeat, and when I exhaled, they found that the veins in my liver collapse. He dug around on me against the edge of my rib cage for at least fifteen minutes before getting good evidence of it.
Then it was time for me to take some of the nasal VIP to see if it would do what it was supposed to do for me. I know this probably all sounds like an exciting opportunity, and it was, but especially because of being only the second patient he’d asked to try it, it also took quite a bit of convincing to get me to go through with it. I’ve previously mentioned my New Bottle Paranoia Syndrome, which causes me to struggle to start new things and to begin them at very low doses, because so often weird things happen.
When Dr. Cheney brought out the spray and showed how much would be dispensed (a big puff), I was extremely trepidatious. He said there’d been no adverse events in Shoemaker’s protocol, and I said, “Remember my response to MTF?” (during my 2011 echo, I had a spectacularly scary response to MTF where I went into instant tachycardia with flushing and I felt really awful). He said, “This is not MTF.” I explained my usual starting at tiny amounts, and after a fair bit of resistance on my part and a little pushing on his part, he conceded that instead of me inhaling it, we could put a little of the spray on a tongue depressor and I could touch it to my tongue. I agreed to that, because it made me feel a lot more in control than giving me a big whack up the nose to start off with.
So I touched my tongue to a drop of the stuff. It tasted mildly salty. After about two minutes, I got a bit of a tight headache across my forehead, which is one of those things that happens for me as a reaction to all sorts of substances. Our original plan was then to have me take a little more, but when the headache came on, I asked if we could measure if anything had changed, and so we did: “It looks like it’s dropped quite a bit, which is a good thing, because if the TR Max PG is dropped, that means you have more blood going in the right direction instead of the wrong direction. And that means there’ll be less refluxing in the brain and the liver, and more output. It’s interesting – he’s measured it twice since you took it, and it’s been about the same both times, ten to eleven millimeters of mercury, and your original was fifteen. So that’s a roughly % drop (my numbers were adjusted later). The patient yesterday was 8%. And that was enough to reverse flow [for that patient].” Michael attempted to see whether the flow reversal in my liver had abated, but it had been so difficult to find in the first place – and I so needed to be done with the echo at that point, after an hour of having the probe jammed into my ribs – that we gave up before determining that conclusively.
Obviously this was big news. Dr. Cheney did have a couple cautions to make, though: “I always caution people about this. Is this the cause of CFS? And the answer is no. It’s the primary complication, but it’s not the cause. The cause is an energy deficit at the cell level, which I believe is due to redox impairment, and I don’t know what’s the reason for that. But the primary complication of a low energy state is flow reversal in the brain and the liver. And that just drags you into a hole. So we can get you out of the hole, but we can’t cure you.
“My cautionary note is this: Every time I find a seminal problem like this, and I treat aggressively, a lot of times, people go in the reverse direction. Because I’ve discovered that there was a reason behind lowering the VIP. Well, you might ask, what would be the rationale for lowering the VIP? Because it would disable you. And does the body want you disabled, when you don’t have enough energy to operate? And actually, that’s what it wants. Because its job is to match supply to demand. Because studies show that a mere 1% mismatch of supply to demand is lethal. The body knows that, so when the supply is low, it tries to bring down demand. And there’s no better way to reduce demand than to reverse the flow in your brain and your liver. That will put you in bed, and you can’t get out. So that’s exactly what the body wanted.
“So I have a little cautionary tale, because I’ve seen this tale before. Little bit of DHEA, better, too much DHEA they crash and burn. Little bit of growth hormone, they get a little better, then they crash and burn. So if you intervene with these abnormalities, you see that things don’t happen quite as predicted.
“On the other hand, we do have evidence from Ritchie Shoemaker that 18 months of therapy with nasal VIP can be a very powerful, effective therapeutic modality, with symptom improvement over 18 months with no significant downside over 18 months. So that’s comforting.”
Nasal VIP is not something you can buy over the counter. It is FDA approved, and has orphan drug status for pulmonary hypertension, but it’s only available from one pharmacy in Massachusetts, which synthesizes it, and they require that you be in a defined protocol from a physician by whom you’re being followed.
While I can’t say this with absolute certainty, because I’ve only had the one dose, I do think the nasal VIP helped perceptibly, besides just giving me a headache. Dr. Cheney told me he thought its half-life was perhaps three hours, and I was surprised by how good I felt for the rest of the day – not at my best by any means, but better than I usually am after a Cheney appointment.
So, am I going to go on it? I may, if I can get through the 20-odd tests Dr. Cheney will require before starting it, but at this point, I am waiting to see how a few others with better function do on it first. My fear is some of what Dr. Cheney mentions above – that messing with this may turn out to be ill-advised for some reason we’re not aware of yet. I also wonder if VIP, by increasing bloodflow, might allow one to exceed one’s energy envelope more easily. I’m one of the sicker patients in the practice, and I have to admit that I don’t want to be the one to find out that this thing lands you squarely in a ditch. Additionally, now that I’ve been a Cheney patient for several years, I’ve seen a few rounds of “best therapy ever” – which they are when they come about – and as I mention above, and as he admits, not all of them pan out in the long term. I wish there was someone else I could link to who’s planning to go on it, but the only other Cheney patient I know who keeps a blog has made basically the same decision I have.
If you want a lot more technical detail about CHVI, check out this presentation, which Dr. Cheney gave a couple days after my appointment, starting around 18:30. If you don’t have the ability to follow video, you can check out Lisa Petrison’s notes on the presentation.
More next time on…everything else besides nasal VIP. Part II continues here.
Wow! I’m impressed by your writing. I have to admit I’m having trouble understanding it but I know it’s well-written and thorough. As someone with chemical sensitivity who cannot take a lot of medications or only can take some at low dosages, I’d be worried about trying new things. And I know you worry about that, too.
Do you think that going to Dr. Cheney has helped you? What do you think has helped?
I’ve become so leery of anything at this point that I almost won’t try anything. Yet I’m not in good shape and now with allergens galore, it’s harder. And I’m not sleeping much. As you say, sleepy? What’s that? (Friends don’t get it at all.)
Thank you for summarizing your appointment and trip. (I would have also reacted to that sofa, and I’m glad you were able to move and get fresh air.) Oh, if only these complications were understood.
Thanks, Kathy. I think Dr. Cheney has helped me a lot. After falling ill in 2004, I went pretty much continuously downhill until I first saw him in 2009. I’ve been making slow improvement ever since. (I wish I had gone to see him much sooner – I might be in a better place now.) When I first saw him, I was pretty much 100% bedridden. I’m about 98% now, which probably doesn’t sound like a big change, but now I can walk to the bathroom, wash my face and brush my teeth in the bathroom (as opposed to with a bucket in my dayroom), can be upright for about 20 minutes as compared to one or two minutes, have been able to care for myself when Chimp has been gone a couple days, can walk out into the garden and do some very light gardening (like planting and harvesting), and have better stamina for typing and better cognitive function that has allowed me to write this blog and play online games. I can’t point to one thing that’s caused all those changes – good sleep has helped, I think the stuff he recommends to shift the immune system has helped. So did GcMAF and so have the transdermal gels that he has his patients use.
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This is an absolutely riveting post – thank you SO much for sharing! I can’t imagine how much it may have taken out of you… maybe next time a good Samaritan could do the transcription?
An observation that immediately came to mind:
THE FDA NEEDS TO BE EDUCATED ON THIS: I remember having great discomfort at the FDA’s (and CAA’s) focus on symptom-based treatments, and just couldn’t articulate it at the time. Your post helped me to get my head around it somewhat. If the body is intentionally making itself disabled to cope with impairment of cellular energy (redox impairment), and we have these examples of other interventions (eg. DHEA, growth hormone) initially helping – then precipitating crashes in M.E., this makes me all the worried about the FDA promoting a symptom-based drug development course. I can’t help imagining the FDA blithely pumping out approvals for stimulants in M.E., only to find patients crashing or dying from them, because our systems are so impoverished at an energy level. Before I knew what was going on with me, I actually – in desperation – tried an stimulant, with ghastly effect – I crashed, and badly. This all brings up the work of Dr Gordon Broderick in computational biology… The key in therapy seems to be to a) either titrate the midstream treatments juuuuust enough, to have clinical impact, without provoking a crash; or b) Treat at multiple points ; or even better c) Get at that darned root cause
Anyone know if VIP is available in Canada?
I most enjoyed your rollicking writing style – very engaging, and a real pleasure (and a hoot) to read. LOL’ing at this one below:
“Making the transcript showed me that part of the reason I leave his office confused is that he will frequently argue both sides of an issue, or even four or five sides of an issue, in a “Well, it may be this caused by this and if it was we could do this for it; but on the other hand, it could be that this is happening, and if that were the case, you might see this or that, and given that, it might seem obvious that this would be the solution, but you don’t want to do that, because we’ve found that if you do, it hurts instead of helps, but if the first part doesn’t hold, we would have to go in this direction, as long as these conditions are met, which we don’t know if they are yet.”‘
Thanks for the comment and the kind words, Maxine. You are very welcome. I think next year I might pay someone to do the transcription. The recording we made this year was a little rough, and it required a lot of replaying (and prior knowledge of Cheney’s modalities) to get it right.
As for the stimulants, that is something that Dr. Cheney forbids his patients to use, for precisely the reason of your experience. The body has us in a low-energy state for a reason, even if we don’t yet know exactly why. The FDA questionnaire’s focus on symptoms made me uncomfortable too – while patient experience is important, there is a group of really expert practitioners out there whose knowledge of the physiology of the illness should be harvested.
I don’t know anything more about VIP availability than what I shared. I would hope that you would be able to get it from the Massachusetts pharmacy.
Thank you Jocelyn!
Sure thing, Maxine!
While I think Cheney is a bit of a long winded talker (so was Dr Goldstein), I am still respect him and was wondering what he was up to these days. It’s very hard to hear from patients of him. (I never saw him, only read about him.) That Shoemaker nasal spray particularly interested me. Thank you for writing. If you’ed just written one paragraph I would have been grateful to transcribe all that is very kind.
You are so welcome, Rachel. Glad I could spread some of his knowledge around.
Thank you for sharing your experience. Very interesting information.
Glad to be able to, Keith! Thanks for dropping by to read.
Thank you so much Jocelyn. I am also impressed, quite the feat to decipher all this and make it enjoyable to read too, which I am going to have to do again in order to take it all in. Pretty scary about all the blood thing going the right way and the wrong way, seems like everything about us is reversed!
Jocelyn, had a similar type trip two years ago that ended up taking several hours more than expected. I like you was very sleepy, and my girlfriend pulled over at a hotel, which I didn’t remember much of until the next a.m. Please remember that you could have put your head down for a few minutes insted of looking for out-gassing, as you could have hurt yourself by falling forward out of the chair, etc. I am not saying it was NOT out-gassing, but many of us forget this part of the illness, that sitting up in a car for long trips hinders blood flow to the brain. I was having fun talking to my girlfriend but all of a sudden I was very sleepy and startled feeling at the same time. She is also a nurse and got me into a room and I was ‘out’ for several hours, not unconscious but knew what was happening and tried to explain. Yet, the fumes in hotels can wipe chemically sensitive people out, and this is not well understood by the industry. Will come back and read more, as this is fascinating, especially the liver illustration of back-flow, and it is very important that people listen to Dr. Cheney as he is an organized thinker and is still working with patients. I would like to see him, but lost my employers insurance several years ago, as my ex refused to pay the premium, or much anything, that is why he is now ex. Best wishes to you! Mary
Thanks for the comment and the well-wishes, Mary. While that’s definitely a good caution, I’m unable to sit up for more than 20 minutes and thus I travel lying down in the back of an SUV. So I had been lying down the whole time we were underway.
Hi Jocelyn, impressive post, and interesting material, though I did have to read it in three separate attempts! I can only imagine how long it took you to put it together.
This is why I started blogging myself, and why I think blogging is so important for people with ME/CFS, to let other sufferers know immediately and at first hand about treatments to try, new experimental options, about breakthroughs and new ways of looking at the condition. So this kind of info is invaluable.
Very interested to hear what you decide to do about the nasal VIP, and how it goes for you if you try it.
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Hi Joc-I reread part one and have read part two. Thank you for the updates.